Archive for October, 2008
To my wonderful wife; happy birthday and I’m sorry I’m missing it for the first time in the best 17 years of my life. I’m the luckiest man alive. I love you, and I miss you and the kids more than I can begin to express. All I can say is only 17 days until I see you. After all, this is a family blog.
Another day of physical therapy, needles in my body, and voltage in my legs (this wasn’t in the spa brochure). But there was a variation to the theme. Amanda, one of our terrific interpreters, was kind enough to set up a day for us with a reflexologist. Now I’ve gotten a lot of massages in my time, I used to go once a week in my Broadway days, and I’ve always said, the harder the better. Until now. I feel like a beached jellyfish. Total invertebrate. The spinal tomorrow should be a cinch, as there’ll be no resistance whatsoever. For someone so slender, this guy was incredibly strong.
PT was more of the same, with new twists every day. Today, I was on my back with my legs crossed, arching my back, playing catch with Jason (hurry, hurry, come see the dancing bear!). Did Godzilla through Tokyo with ankle weights. I’ve been on my back, lifting my butt, and balancing on my shoulders and feet. I started this with 20 lbs. on my stomach, then with Jason (all 150 lbs. of him) trying to push me down. Now he’s sitting on me, and I’m still pushing him up. I may be uncoordinated, but I’m still strong.
After PT, I hit the steps with the ankle weights. I slipped and hit the big step, cutting my shin. In acupuncture later, Jason notices this, and without warning, puts a swab soaked in alchohol on it. I let out a yell that scared everybody in the room.
Called my mother-in-law today, my father-in-law passed away just before I left (Great week for my wife, fly to Florida for 4 days for her dad’s funeral, then hurry back to pack up your husband for China) she was tickled pink to hear from me half way around the world. Skype is great.
October 30th, 2008
Another exciting day in Qingdao. Had PT this morning, topped it off with some extra stair work. Then my second IV in the afternoon, almost fell asleep in the chair. When we got to the IV room it was chained from the outside, and there were nurses inside trying to get out! I kept looking for Moe and Curly, but they didn’t show.
IV was interesting, one of the moms was there with her boy, and she is in health care. She pointed out to me that there was a large bubble in my line, headed for my vein. As this is not good, she tapped it out for me.
My sister and her family, my family and my mother often get together on Friday nights. We usually order pizza or Chinese. Well, someone’s going to have to start cooking. Had dumplings for lunch AGAIN and I’ll probably have pizza for dinner AGAIN, only this time no corn, thank you LA Pizza. Will I be getting paid for product placements? Guess not. Screen Actor’s Guild doesn’t have jurisdiction in China. In my previous life I was a classical singer and commercial voiceover actor, you know, one of those guys who tells you to buy stuff you don’t need. Even if (when!) this works, don’t think I’ll be going back to that. It’s all about talking fast, and I was good at that, but it’s not currently one of my strong suits. The irony of this is not lost on me. But one never knows, do one?
Getting that seventh IV treatment is not going to force me to change my escape plans, um… flights. Now I just have to find out what it’ll cost. Wonder how much they’re going to stick me for?
October 29th, 2008
Pretty much the same as yesterday. Therapy and more therapy. Found out I will be getting that seventh injection and only one more spinal! I told the doctors I would do whatever was necessary, but this is the way they want to go. The doctors examined me again today and said I’m making excellent progress. IV tomorrow, spinal Friday, and 3 more IVs after that. I’ve been doing PT once a week for a year and a half (all that insurance allows) but when I get back, I’m going to step it up to three times a week for the next three months. It’s very important to give the stems their marching orders early on.
We’re losing another couple and a mom and grandson from Nebraska tomorrow, drinks and appetizers tonight. A mom and her daughter(early 20′s) from New Zealand arrived yesterday. This girl was 21 years old when she died of a heart attack. They brought her back and she died three more times in the ambulance. Oxygen deprivation.
So people come and go, and one problem is more horrifying than the last. Makes you realize that your problems aren’t so bad. A lot of people are telling me how brave I am for coming here alone. I’m not brave. I’m just doing what I have to do. The brave ones are the 5 year olds with Cerebral Palsy and Optic Nerve Hypoplasia and autism and oxygen deprivation from drowning that are here, smiling despite their challenges. And their parents. That’s bravery. I’m not religious, but I thank God that my problem is not genetic. I don’t know if I could face that.
October 28th, 2008
Sure enough, a little activity has done wonders for my mood. PT in the morning, acupunture and electrowave in the afternoon. The PT is quite strenous. We start off with leg/butt lifts,so I’m balancing on one foot and my shoulders for a minute at a time (serious hamstring burn). Then “Superman” with the left arm and right leg in the air, balancing on the other knee and hand for a minute at a time, then reverse. Then fifty leg lifts with ankle weights. Then it’s on your knees playing catch “round the world” with a cloth ball.
Then it’s on your feet for “squats” holding a dowel for balance, going down to a full squat, holding it for a minute, then back up. Then a balance board, like surfing. And what I call Godzilla through Tokyo, which is walking over little hurdles (I do that one back home). Then we move over to the steps. There’s one double step, up and down, left then right, no hands. Then up and down half a flight of stairs, no hands. Twice. Then lots of heavy breathing. It all takes about 45 minutes. I’ve been doing PT at home for a year and a half, but it really doesn’t compare to this. Just completing it belies my thought that I was back to square one.
Had a talk with Wendy today, turns out it wasn’t the big boss who finally got the spinal right, it was the anesthiologist (that’s a lot easier to spell than say), and he’ll be doing the spinal on Wednesday, with a double or triple dose of valium. I also asked about a seventh injection, and they’ll let me know tomorrow.
My friends next door. Diane and Chris, brought me a present last night, McDonalds!I’m saving it. They get out more than I do; it was awfully nice.
Some turnover here, we’ve lost a few folks, and a new mom and her mother and 19 month old daughter from Capetown came in. At almost two weeks, I’m no longer “the new guy”.
This evening, 7 or 8 Drs., led by “Dr. Joe” gave me the once-over. I’m used to it by now. They did a lot of talking between themselves and even though Wendy was there, there wasn’t much translating, probably a lot of medical jargon. Dr. Joe was in his 70′s, a good 40 years older than the rest, a professor and his students.
All in all a fairly busy day. More of the same tomorrow and a spinal on Wednesday.
October 27th, 2008
I think I’ve hit the doldrums. The middle of the voyage when you’ve been gone long enough that the novelty is gone, and yet too much time remains to see the light at the end of the tunnel. Last week’s unfortunate incident didn’t help. Nor does the fact that life seems to be going on at home without me. My wife is in the middle of an extremely demanding academic schedule, my children are in the middle of their school year with sports and play dates, and I’m here, at the end of a weekend doing absolutely nothing.
There’s a big hubbub going on around here, some bigwigs are coming in for an inspection. This morning, a whole team of cleaners, nurses and interpreters swept through here, changing sheets two days after previously doing so, cleaning the place within an inch of its life, asking us to straighten up shelves and closets, refrigerators and laundry. This is not going over really well with the animals in the zoo. Excepting myself (being here alone) everyone is in cramped quarters, most with small children in tow. The last thing anyone wants is to be told to tote that barge or lift that bale. Although one does get the feeling that if there’s a failing grade, someone will be going to jail.
Tomorrow, therapy schedules are being changed. mine for the worse. My next spinal is scheduled for Wednesday, and I’m getting resistance regarding communicating with the head doctor. I’m not really thrilled about that. I do not want a repeat of Friday’s fiasco. I can feel the ugly American peeping out from under the rock whence he came.
I think getting busy with therapy tomorrow is just what the doctor ordered, no pun intended. A little honest sweat could be just what I need to kick this poor me garbage right in the teeth.
October 27th, 2008
Saturday, a day off. Went to K-Mart (not) with Jim and his wife and got groceries. I noticed something telling about big business. As my friends and family know, I’m a diet coke fiend. I bought some equivalent to the 20 oz size for 2.50 RMB apiece, approximately 35 cents. Now you know they’re making a profit on that, assume it’s a modest 5%, or 1.75 cents. That means it costs them about 33 cents a bottle. They charge a buck and a half for that bottle in the U.S., two at a deli, for a profit of about 500%, give or take. And take they do, whatever the traffic will bear.
Had dinner with my neighbors Chris, her mother Diane, and her five year old daughter, really nice people. Chris and Diane checked in on me yesterday, when I was stuck in bed after the spinal. We went to the International Buffet at a beautiful five star hotel. Once again, wonderful ambience, excellent service and food, for about fifteen bucks each. Although I could have done without the pig tails, chicken feet, and just about every part of a duck, including the sliced in half heads.
Like I said, international.
All of this would have been a lot more enjoyable, if I hadn’t taken three steps back on the ataxia front. I’m not sure if it was the fun filled spinal, the lack of sleep afterward, or the ups and downs of this wonderful syndrome that account for it, but I basically lost all the gains previously made. Even though we were warned this could happen, it’s somewhat discouraging. When you’re used to dealing with something, you adjust, but when all of a sudden you get significantly better, then backslide to where you were…
Well, tomorrow is another day off. Another day to prepare for the rigors to come.
October 26th, 2008
I would like to extend my sincerest respect and sympathy to the millions of mothers (including my beautiful bride, happy 15th anniversary, honey) who have had epidurals.
I had my first spinal today. The average procedure lasts approximately 15 minutes. Mine lasted 2 hours. I got stuck about 25 times, my back feels like they installed a sprinkler system in it.
It’s my guess that the valium drip administered is calibrated for a 150 pound person. Unfortunately, I haven’t weighed 150 pounds since 5th grade. Next time, I want a triple dose of valium, and a double Jack on the rocks.
Seriously, the doctor who began the procedure did his best, and felt terrible (although not as terrible as I did) about the whole thing. They said the problem was I had a muscular back. They finally brought in the boss man, and he got it in on the first shot, home run. Needless to say, I’m requesting/demanding the boss for the next one along with the triple and the double (that way I’ll only be a single away from the cycle.)
After the Inquisition, I had to lie on my side for the next 4-6 hours, so if there was any benefit to this, I doubt if I’ll know until Monday.
My new PT, Jason, is tough. I think he was surprised I kept up. And I was mistaken about Wendy, she is not just a translator, but the patient co-ordinator. Sorry, Wendy.
Anyway, I’m off Saturday and Sunday. This is definitely good.
October 25th, 2008
Today, a word on arrogance. And provincialism. I had a correspondence with an old friend that reminded me of all the “specialists” who were against this trip. Even told me that this might kill me, or at least make things worse. Well, so far, that turns out not to be the case. I’m not sure what motivates this, “if we aren’t doing it, it can’t be done”, or , “oh, those Chinese, they’re good at acupuncture and herbal medicine”, but I sure am glad I didn’t listen.
Well, enough vitriol for one day. I was saddened to hear that Martin, my wonderful physical therapist and acupuncurist, was transferring to another hospital tomorrow. I asked him to a farewell lunch. I thought it was a little early when he wanted to leave at 10:30. He said he would take me to a place a short walk away.
Bataan was shorter. By the time we got there, I was sure this was one last session of PT. We sat down (finally!) only to find out that this place was no longer serving food, drinks only. So we got into a cab (thank God) and went to a place that I unfortunately didn’t get the name of.
We walked into this place only to find there’s a two story spiral staircase to the dining room. This may as well have been Everest, as far as I’m concerned. I should have said no, but we’d already struck out once, so what the heck. Now, I knew full well that going down those stairs was going to be a lot harder than going up, but I figured that would take care of itself (Must’ve been the stem cells talking).
Well, I made it, which simply wouldn’t have happened, oh, a week ago. And it was definitely worth the ascent, and descent. This place looks like a country club. We sat on two love seats at a low table next to a concert grand piano. The menu had a “western food” page in English. I ordered a ribeye steak and a glass of blended fruit juice. Martin, a filet.
What we got was: a salad of cucumber, tomato, onion, cubed apples in a sour cream sauce and slices of banana. Rather odd combination that came with two slices of what I can only describe as Texas toast. I ate the fruit and the toast, not bad.
Then they brought the fruit plate, More banana, pear, watermelon, and other fruit I couldn’t identify, fresh off the vine or tree or whatever. By now I’m getting full. THEN they brought the soup, a corn(!) chowder which was actually quite good.
Then they brought Martin’s filet on a sizzling platter with all kinds of vegetables, what looked like fusilli, and a fried egg. The waitress poured a tomato based vegetable sauce over the whole kit and kaboodle. It sizzled so fiercely that Martin had to hold up his napkin like a welder’s mask. I asked him what the sauce was, and he just shrugged his shoulders.
My ribeye was a bit more sedate, about ten ounces of beef (more meat then I’ve had since I got here) on a bed of shoestring fries. There was a brown sauce on the side. I don’t know what this stuff was, but if I could patent it in the states, I’d be rich. It was beefy and spicy and rich without being cloying. I poured it all over the steak and devoured it. By far the best meal I’ve had here.
The reason I’ve gone into such detail was the check: 230 RMB for both of us. That’s $33 U.S. folks, no tip allowed.
First spinal tomorrow. I can’t wait.
October 23rd, 2008
Don’t know how long this will be, as I’m so tired I can’t see straight. That 2 hour nap yesterday kept me up half the night, and I woke up so wiped that PT was really hard. So today I stayed up… so I can sleep tonight(?). I can’t take full advantage of the PT if I’m the walking dead. Can’t burn both ends of the candle like I used to, half age and half ataxia (although the line is blurred a bit.)
After the three therapies, didn’t do much of anything, watched a movie to stay awake, and I spent some time with the kids here. One little boy kept asking me to sit on the floor with him. When I told him I couldn’t, he asked me to pick him up, I had to tell him I couldn’t do that, either. One of the things about this garbage that bothers me the most is my inability to pick up my kids. Well, with a little luck, that will change.
I saw Jim and his wife today, he was hardly using his cane. He’s looking forward to Friday’s stem cell infusion even more than I am. And why not? That’s why we’re here.
So let’s get on with it.
October 22nd, 2008
Before I came over here, I worried that I might be making a very expensive mistake, sort of like buyer’s remorse before you have what you bought. Well, I don’t feel that way anymore. Today, I was talking better and basically using my official Heidi walking stick as a safety measure only. Rising from a sitting or prone position was much easier, and I had a lot more energy. In fact, so much more that I kind of overdid it.
After lunch, (finally couldn’t look at another dumpling, switched to fried rice) I went into town to have my computer checked out and go grocery shopping. One of the interpreters, Wendy, took me. Her fiance, Brian, came too. Wendy is great, her job includes a lot more than interpreting, everything from the day trips with the inmates to taking care of the kids. When I asked how she and Brian met, I was stunned to hear that he was a former patient. He, too, had ataxia, a genetic form, SCA-1 I think he said. I couldn’t believe it! This man seemed completely normal, from speech to balance to walking. Now he did say that his case was milder than mine, and that he had had 2 sets of treatments, 6 and 4 injections (I think he came back the second time as much for Wendy as for the treatments), but the results were amazing.
Anyway, after an afternoon of computer doctoring and shopping, I was really wiped out, and sure enough, I noticed more of a problem walking, but not as much as before the stem cell infusion, 2 steps forward and 1 back. But after resting up a little bit (okay, I was dead to the world for 2 hours) I was right back at that higher level of function. I’ve known for a long time that rest has a lot to do with this condition, and that hasn’t changed, but I’ve only had one treatment, and an IV at that.
Got a different kind of pizza for dinner, and damned if it didn’t have corn on it! What is it with these guys?
October 21st, 2008
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